Susie Aldiss

Methodological Issues When Using the Draw and Write Technique With Children Aged 6 to 12 Years

Researchers are responsible for using techniques that allow children to contribute their perspectives in a way that is most suited to their strengths and preferences. The draw and write technique is a method that needs to be used carefully and sensitively if children are to become active participants in revealing their world as they see it. In this article, we explore the issues for the child and researcher of using the draw and write technique as a participatory research methodology. Reflections on the technique are drawn from our experience of using it with children aged 6 to 12 years. This was part of a larger study undertaken to enable children aged 4 to 18 years with a diagnosis of cancer to give their views about hospital care. The participating childrens verbal and artistic contributions illustrate how children are able to convey their opinions when there is an enabling climate created.

Involving health professionals in the development of an advanced symptom management system for young people: The ASyMS©-YG study

PURPOSE OF THE STUDY ASyMS is an advanced symptom management system utilising mobile phone technology for patients to report cancer chemotherapy-related symptoms. The aim of this paper is to present health professionals involvement in the development of ASyMS for use with young people (YG) and evaluate their perceptions of the system. STAGE 1: Health professionals reviewed the symptoms chosen by young people to be included on the personal digital assistant questionnaire to confirm they would have universal relevance. These included: mouth sores, nausea, diarrhoea, vomiting and weight loss. STAGE 2: Health professionals completed a questionnaire prior to the study commencing, which suggested they felt ASyMS-YG would give young people control and facilitate timely interventions when symptoms occur. Post-study perceptions were sought through semi-structured interviews and consultation sessions with 23 health professionals. These showed two over-arching themes: young peoples symptoms and perceptions of ASyMS-YG; and six sub-themes: increased control for young people; enhances communication between young people and health professionals; and helps with professional early intervention; increased support for young people; improve knowledge and understanding; technology appealing to young people. CONCLUSIONS This early development work indicates that ASyMS-YG is acceptable to health professionals and their perceptions of the system were overall very positive. Health professionals will continue to be involved in the study through developing self-care guidelines and alert system, which will be tested in an exploratory trial (stage 3) and randomised controlled trial (stage 4) in the future.

Utilization of the medical research council evaluation framework in the development of technology for symptom management: the ASyMS©-YG study

Background: Technology is becoming an important medium for supporting patients in health care. However, successful application depends on user acceptability. The Advanced Symptom Management System (ASyMS©) involves patients reporting cancer chemotherapy-related symptoms using mobile phone technology. Objective: The aim of this article was to report a study of how young people were involved in the development of ASyMS© using the Medical Research Council framework for evaluating complex interventions. Methods: A convenience sample of young people aged 13 to 18 years undergoing cancer chemotherapy were recruited from 2 principal cancer treatment centers in London. Results: In phase 1, young people selected 5 symptoms from an adapted version of the Memorial Symptom Assessment Scale that were most important to them. In phase 2, young people completed the ASyMS©-YG PDA (personal digital assistant) questionnaire daily on days 1 to 14 of a cycle of chemotherapy and pre/post-use questionnaires. In phase 1, 5 young people chose diarrhea, nausea, vomiting, constipation, and weight loss as the most important symptoms. In phase 2, 25 young people reported positively to using PDA technology, found ASyMS©-YG simple and easy to complete, and liked that they were monitored at home. In addition to the 5 core symptoms, the ASyMS©-YG reports showed the number (n = 37) of other symptoms young people experienced. Conclusions: This early development work indicates the acceptability of ASyMS©-YG and has informed an exploratory trial (phase 3) and randomized controlled trial (stage 4). Implications for Practice: This study reaffirms the importance of promoting communication between young people and health professionals.

Working in collaboration with young people and health professionals. A staged approach to the implementation of a randomised controlled trial

ASyMS© is an Advanced Symptom Management System utilising mobile phone technology to monitor chemotherapy-related symptoms and promote self-care. It was first developed with an adult cancer population and is now being evaluated with young people through an iterative development process. ASyMS© involves patients recording and sending symptom reports to the hospital and receiving tailored self-care advice. Health professionals are alerted when severe symptoms are reported. Three phases of the ASyMS©-YG (young people) study are complete. Phase 1 involved young people identifying the symptoms to be assessed. Phase 2 involved young people testing the symptom report system, and ascertaining young people’s, parents’ and professionals’ perceptions of ASyMS©-YG. This paper reports on Phase 3, in which the system was developed further in preparation for a randomised controlled trial (RCT). Health professionals devised an alert system based on risk modelling side-effect severity, and young people and professionals developed self-care advice. A pilot study was conducted to test the alert system and study design in readiness for a definitive RCT. The contribution young people and professionals have made to this project is invaluable in evaluating the practical effectiveness of ASyMS©-YG and ensuring the intervention is acceptable and works in everyday practice.

A critical review of the use of technology to provide psychosocial support for children and young people with long-term conditions.

Advances in technology have offered health professionals alternative mediums of providing support to patients with long-term conditions. This critical review evaluated and assessed the benefit of electronic media technologies in supporting children and young people with long-term conditions. Of 664 references identified, 40 met the inclusion criteria. Supportive technology tended to increase disease-related knowledge and improve aspects of psychosocial function. Supportive technology did not improve quality of life, reduce health service use or decrease school absences. The poor methodological quality of current evidence and lack of involvement of users in product development contribute to the uncertainty that supportive technology is beneficial.

“We Sometimes Hold on to Ours” – Professionals’ Views on Factors that both Delay and Facilitate Transition to Adult Care

Background The transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed “care gap.” Health service provision, which fails to meet the needs of young people and families at this time of significant change, may result in deterioration in health or disengagement with services, which can have negative long-term consequences. Developing transitional care packages has become a focus of activity in the United Kingdom and elsewhere. Indeed, policy documents have been trying to guide practice for many years, with some variable success. There is much work still to be done, particularly around how guidance and the sharing of best practice, when combined can result in a change in practice. Objective This study aimed to explore the views of professionals involved in transitional care, the process of transition in their services, and the barriers and facilitators to transition. Methods This was a qualitative study using focus group methodology. Four focus groups were carried out, attended by 36 health professionals across child and adult services. They had expertise in working with young people with various health conditions and disabilities. Transcripts were analyzed using qualitative content analysis. Results Eight key factors that impact on transition emerged from the data. These included factors associated with the patient group (such as age, health condition, having complex needs) as well as factors associated with services (such as the availability of equivalent services within adult care and the links between child and adult team). Conclusion It is imperative that health professionals consider the population they are working with when planning transitional care and take into account the factors which can lead to delayed transition, so that this can be avoided if possible. Numerous examples of initiatives to facilitate more timely transition were shared: these have been reflected in our “Benchmarks for Transition from Child to Adult Health Services.” We offer these benchmarks to inform and guide the practice of others and illustrate their potential for use in the context of the findings shared here.

Adding to the transitional care evidence base for future national guidance

We wish to highlight a Cochrane review,1 published since the 2016 NICE guidance for transitional care,2 that concluded that evidence is limited on how transitional care should be delivered.1 Challenges to research are centred on evaluating a complex intervention that crosses medical, social, and educational disciplines, as …

G240 Coordinating care: the multifaceted role of the key worker in children’s cancer care

Aims The cancer journey is complex and involves care interventions from various multisite professionals. There is a need for effective co-ordination between those professionals involved in the care of children and young people. The key worker role (i.e., named individual) has been identified to provide this service. Little is known however about how this role is being implemented, what are the obstacles and facilitators for an effective coordination of care and the impact it has on services and on the work between the different professionals involved in the patient’s care. This first phase of our study aims to describe post-holders’ perceptions of the specialist key worker role working within and out with children’s cancer units across the UK. Methods A group of children’s oncology specialist nurses across 18 Principal Treatment Centres are currently funded as a key worker for families. This study used a qualitative approach to explore their views of the role. Eighteen individual semi-structured interviews and one focus group (n = 12) were conducted. Results Thematic analysis revealed three main themes -model of care, needs assessment and perceptions of the role. This in-depth exploration of key workers’ role, their caseload, and the context of their practice contributed to the identification of different ‘models of care’. Variations were identified in nurses’ management leadership role in ensuring the coordination, communication and planning of the team work; nurses supportive role in the provision of expert advice and guidance to other members of the team and impact on the services. A holistic approach to families’ needs has been adopted. Coordination of care, support and information were the main aspects of the role identified by professionals. The use of the ‘key worker’ term varied and there were mixed attitudes towards the term. Conclusion Data has revealed complexity and variation in the role, showing the realities of how it works in practice and the challenges it entails. Care coordination is perceived as important, but less than straightforward. This presentation will present a perspective on the key worker role that is fundamental to the experience of patients following their cancer diagnosis.

Gathering expert opinion to inform benchmarks to support transitional care

This study aimed to (1) explore views of known experts leading on transition, (2) gather insights on the essential features of transitional care models and (3) highlight opportunities for and barriers to change: to inform core elements of benchmarks for transitional care. We held three workshops (n = 20) and used a telephone interview (n = 1) with health and social care professionals with expertise working with young people with a range of health conditions and disabilities. The workshops included individual brainstorming and group discussion. Data were analysed using qualitative content analysis. The general consensus from stakeholders’ discussions about transition was that ‘things have become stuck’. Themes included: professionals’ attitudes towards and knowledge about young people and transition, organizational barriers and ‘lack of joined-up thinking’ between services. Our work offers further insight into experts’ perceptions of transition services within the United Kingdom. It is clear that there is still much to be done to improve transition, to better meet the needs of young people and parents and begin to offer equitable access to transitional care programmes. The benchmarks offer a starting point for professionals seeking to improve transition through enabling the identification of gaps in services and providing a platform to share successful practice initiatives.